I Swear I Have Celiac Disease...but....

[ktnhsv]

What do you think? Here are my symptoms :

SEVERE Eczema on ears/scalp/forehead (since childhood)

Acid Reflux/Heartburn/Hietal Hernia

Weight Gain

Severe cravings for dairy and sugar

Low Blood Sugar symptoms

Severe achey muscles-all over body

Severe Fatigue

Past 5 years-many teeth have crumbled or decayed

Anemia

Anxiety/Depression

Irregular periods

Allergies

By the way, I'm 31, female, mother of 5. No doctor or dentist has ever suggested this, I just discovered it recently on my own!

[ravenwoodglass]

If you can't see a doctor for testing then just give the diet a good strict try. However if at a future time you do want a doctor derived diagnosis it will mean you will need to go back on gluten for at least 3 months to redamage enough for an 'official' diagnosis. I am not saying you shouldn't try the diet I just want you to be aware that you have to be eating gluten if you later have doubts.

[GottaSki]

Good Morning ktnhsv-

If you found the possibility of Celiac on your own, I'd say your best (least frustrating and least expensive) route is too go gluten-free for at least a couple months.

I did have many symptoms similar to yours.

As a busy mother of five, I'd imagine that feeling better is more of a concern than an official diagnosis.

If your health improves while eating gluten-free, you'll have your answer.

If you choose to go gluten-free -- be sure to ask as many questions as you need to -- that first month was tough on our family -- the learning curve can be difficult and frustrating -- but oh soooooo worth it.

Good Luck and Welcome!

[ktnhsv]

Good Morning ktnhsv-

If you found the possibility of Celiac on your own, I'd say your best (least frustrating and least expensive) route is too go gluten-free for at least a couple months.

I did have many symptoms similar to yours.

As a busy mother of five, I'd imagine that feeling better is more of a concern than an official diagnosis.

If your health improves while eating gluten-free, you'll have your answer.

If you choose to go gluten-free -- be sure to ask as many questions as you need to -- that first month was tough on our family -- the learning curve can be difficult and frustrating -- but oh soooooo worth it.

Good Luck and Welcome!

Have you improved gluten-free? I was reading your profile and it sounded like you had not?

[ktnhsv]

If you can't see a doctor for testing then just give the diet a good strict try. However if at a future time you do want a doctor derived diagnosis it will mean you will need to go back on gluten for at least 3 months to redamage enough for an 'official' diagnosis. I am not saying you shouldn't try the diet I just want you to be aware that you have to be eating gluten if you later have doubts.

Yeah, I have read that. I've been doing lots of research on it. I wouldn't mind getting the blood test, but I'd skip the biopsy...no thank you!

Going gluten-free would be extremely difficult.......as I eat gluten just about every time I eat. I keep thinking "maybe it's not gluten intolerance". But the more I read, the more it seems to be.

[GottaSki]

I have most definitely improved with all my digestive issues - I am even losing weight (about 20 pounds this past 9 months) - I had unexplained weight gain for years - about 5-10 pounds every year!

Also my vitamins/mineral blood tests have all improved every three months since eating gluten-free and supplementing with vitamins - multi, B, D, Fish Oil

Many of my other symptoms, fatigue, fogginess, heat-intolerance, etc. remained the same or got worse until I was recently diagnosed with Fibromyalgia - am taking Malic Acid and some other supplements for the Fibro symptoms and have improved a great deal these past two weeks.

If I were you, I'd start with strict gluten-free first, a good multivitamin might help -- don't change too many things at once. Give yourself a chance to see if removing gluten helps before you try other solutions.

[GottaSki]

I should add that when I was diagnosed I became extremely frustrated that my improvement was not dramatic as some that post had.

Everyone heals at a different rate and can have different level of damage to their intestine. It can take up to two years to completely heal, although there will be many minor improvements before that if gluten is the issue.

For me - I'm 44 - I think it took longer for me because more damage had been done compared to a younger person or a child.

[ktnhsv]

I think I'm scared that all that sacrifice and torture (lol) , won't help or pay off. I feel like I suffer enough, and now I'm supposed to add to it! But I'd love to feel better.

[ravenwoodglass]

I think I'm scared that all that sacrifice and torture (lol) , won't help or pay off. I feel like I suffer enough, and now I'm supposed to add to it! But I'd love to feel better.

The gluten free diet is not a sentence to a life with no goodies, french bread, cookies, pizzas, muffins, pies, etc can all be made gluten free. I really don't feel I am sacrificing anything. Was it a bit tough to get used to in the beginning? Sure it was but I didn't have all the great folks here to help and guide me along. You do. Just the fact that your symptoms led you here, and you do fit as a possible celiac, is telling. You can do it. The easiest way and the fastest way to heal is to go with whole unprocessed foods in the beginning. There is a whole world of naturally gluten free food out there. If you have favorite foods that are not gluten free do ask in the products section what replacements others have liked. I hope you give the diet a shot, I have a feeling you won't be sorry.

[brigala]

The gluten free diet is not a sentence to a life with no goodies, french bread, cookies, pizzas, muffins, pies, etc can all be made gluten free. I really don't feel I am sacrificing anything. Was it a bit tough to get used to in the beginning? Sure it was but I didn't have all the great folks here to help and guide me along.

^^ THAT!

I eat better now than I ever did before, because GONE are the cheap frozen foods and top ramen and stuff-baked-with-mushroom-soup. Instead, I've learned to cook from scratch! It's hard when I'm away from home, but in my own home I am no longer missing out on anything.

[Nancym]

Well, you're in luck. This is one disease you can test yourself and treat yourself if you put your mind to it. Just get up to speed on the gluten free diet. I suggest eating foods as whole and natural as possible, eliminate the manufactured stuff so you don't have to worry about cross contamination. If you have to spend more than 2 seconds looking at a label, put it down and make something for yourself from scratch. You can even feed your whole family this way and they'll all be fine, maybe even healthier than usual.

Give it at least 2 very, squeaky clean weeks at the minimum. A couple months is even better. See what happens.

And you get to make a choice... do you look at this as an opportunity to take charge of your health, learn how to cook in new delicious ways or you can look at yourself as a victim. Lots choose to go the victim route and they spend a lot of time feeling angry and depressed. They're missing a huge opportunity to turn around their eating and still eat delicious food but food that's lots healthier.

[lynnelise]

I'm new here as well and have many of the same symptoms as you do. I actually had an EGD several months back, but they were looking for an ulcer and did not biopsy for celiac, it was noted that my small intestine was quite inflammed. My bloodwork for celiac was inconclusive so I took the plunge about two weeks ago to just try the diet. I know it's hard to commit to without a positive diagnoses but I just have felt so terrible for so long that it's worth giving up gluten to feel like a human! So far (2 weeks in with a few accidents) I am feeling a lot better! Less joint aches, less fatigue, WAY less digestive pain and trouble. So I guess what I'm saying is yes it's restrictive but you can work around that and experiment in the kitchen and if it helps trust me you'll be glad you tried it!

[GottaSki]

Everyone is right...this is not a punishment. My family eats the same or even better than before. Even the non-celiacs are feeling better in our household. Miscellaneous family and friends are amazed at how good our cooking is -- most were afraid to come for dinner once I was diagnosed and explained that we needed to remove gluten.

It does take a while to transition, but improved health is far worth the trouble.

I hope you consider going gluten-free -- if for no other reason than to rule out this very serious disease. Who knows, you may even find yourself feeling good very soon.

[ktnhsv]

It's so hard because I CRAVE wheat, dairy, and sugar. I feel like a drug addict trying to quit.

[cruelshoes]

In some people (autistics specifically) gluten has been known to have an opiate-like effect in the brain. Many extrapolate that this is one of the reasons people find it so hard to give up.

Open Original Shared Link

Gluten intolerance, in Autism, is thought to be related to the incomplete digestion and breakdown of proteins. Normally, proteins are digested by enzymes in the intestines and are broken down into long chain amino acids. With maldigestion, short chains of these amino acids, known as peptides, will develop in excess amounts and enter the bloodstream. Peptides from proteins such as gluten and casein, called "exorphins," are biologically active. They interact with opiate receptors in the brain and have the same effects as opiate drugs like heroin and morphine and are also addictive. There are 15 opioid sequences in one molecule of gluten. (13) In fact, the peptides can be up to 30 times more potent than morphine.

The effects of opioids on the body are numerous. (14) "Opioid peptides are key signaling molecules between the endocrine, immune, brain nerve tissues, and the pineal complex, the latter is particularly associated with circadian rhythms." (15) Any abnormal alteration in the quantity of these peptides will have a detrimental effect on all of these systems. Some of the other effects on the body are decreased gastric acid secretion, reduced glutathione levels, immune system depression and modulation of cholecystokinin levels. All of these effects contribute to the inhibition of normal brain, bodily function and growth.

Also see - Open Original Shared Link

It isn't impossible to do with out it. I gave up gluten 4.5 years ago and have never looked back. Ravenwood glass gave good advice in her post. You can go gluten-free now (100%, no cheating) if you can't afford the testing. But if you ever wanted to have the testing done in the future you would have to go back on a gluten diet for an extended period of time.

Good luck with whatever you decide to do.

[larry mac]

What do you think? Here are my symptoms :

SEVERE Eczema on ears/scalp/forehead (since childhood)

Acid Reflux/Heartburn/Hietal Hernia

Weight Gain

Severe cravings for dairy and sugar

Low Blood Sugar symptoms

Severe achey muscles-all over body

Severe Fatigue

Past 5 years-many teeth have crumbled or decayed

Anemia

Anxiety/Depression

Irregular periods

Allergies..........

I have Celiac Disease and didn't have any of those symptoms. But that's the wierd thing about the disease. Symptoms are all over the place, or no symptoms at all.

I wouldn't mind getting the blood test, but I'd skip the biopsy...no thank you!

You get the blood test first, and then if positive you need the biopsy to be sure.

Going gluten-free would be extremely difficult.......as I eat gluten just about every time I eat.

Yes it is extremely difficult. That's why it's imperative to have a definate diagnosis. And of course you eat gluten every time you eat, who doesn't? I use to make bread a meal all the time.

I think I'm scared that all that sacrifice and torture , won't help or pay off. I feel like I suffer enough, and now I'm supposed to add to it! But I'd love to feel better.

That's why it's necessary to get an official diagnosis. Then you know for sure, and you know you have no choice but to be on a gluten-free diet for life.

It's so hard because I CRAVE wheat, dairy, and sugar. I feel like a drug addict trying to quit.

Dairy and sugar have nothing to do with Celiac Disease. Only wheat, barley, and rye. And because of likely cross contamination, oats.

best regards, lm

[ciavyn]

I don't have near as much experience as many of these folks, but I've been off for over two weeks, and I can't get over the results. I had to drop a few others from my diet - dairy, nuts, AND gluten - but I've eaten better the last week than I have for most of my life. We rely so heavily on easy, pre-packaged meals that we forget what real food tastes like! Frozen food is gross! But I've always eaten it because 1) I watch my weight like a hawk, 2) it's easy and quick, and 3) it's cheap. But notice nothing in there says it tastes good...because it doesn't. And you feel so much better when you are off the things that are hurting you. And there are so many things to try out and taste...trust me. I thought it was awful, but now, I'm actually getting to like the adventure.

The worst thing that will happen is that in a month or two, you won't feel that much different, and you can narrow down your issues. Believe me, in the meantime, if you use your resources and spend some time learning about what real food tastes like, you won't regret the decision.

[GottaSki]

It's so hard because I CRAVE wheat, dairy, and sugar. I feel like a drug addict trying to quit.

Ok, now I'm starting to feel like a gluten-free Salesperson (just kidding )

So if the difficulty of craving wheat, dairy and sugar is the road block -- just throwing this out there and not endorsing it --

Can you bake? If so, bake lots of sugary treats -- cookies, cakes, brownies, etc - Hey you can make some very sweet rice crispy treats even if you can't bake -- make sure you use EnviroKidz Koala Crisp instead of traditional Rice Crispies and Kraft Marshmellows (we had a reaction to a storebrand).

Is there a reason you need to remove dairy? If not -- load a corn tortilla with cheese and melt for easy snack. Many ice creams are gluten free -- vanilla usually is and you can add carmel or nutella or peanut butter or gluten-free choc sauce.

Breads are more difficult -- took us a long time to find an easy one to bake -- don't know where you live but many places around the country stock Udi's -- if a local store stocks it -- it is worth the money -- just make it your bread and keep it away from those 5 kids -- unless they are showing signs of possible gluten problems of course .

Warning: If you dine on only these suggestions, you may have a slight weight gain -- but at least you may have an answer regarding gluten.

All right, I'm done for tonight...

Feel free to let me know if you'd like the pep squad to dial it down a notch!

[amberlynn]

Sound an awful lot like my symptoms...

I have not been 'officially' diagnosed, but the results from the diet are more than enough for me and my doc (who is the one who was unsure I had a gluten problem and refused to give me the test, but I digress).

Muscle soreness, joint pain

Severe fatigue: to the point where I was actually falling asleep standing up at work

Allergy fog: I seriously thought this was normal!! It's gone anyway...

I have tons of allergies, but no idea if this is in direct relation or not. We'll see come spring!

Nausea all the time. So bad, I thought I was pregnant again! Even got sick a few times!!

I do have a weird rash all over my legs, but a derm told me it was acne - but nothing has ever made it go away! Its just now starting to dissapate on my arms.

I also had the low blood sugar problems, my whole life. If I didn't eat every2 hours, I'd get nausea and a headache. Now I can go all day and forget to eat with no issue, lol! Not great, but better! And I was always hungry, I could eat a full meal, and be starving again an hour later! Since I go to the gym frequently, I didn't put on a ton of weight, but I put on enough.

I always had trouble making clear, concise thoughts.

Highly irregular periods. I would go upwards of 6 months w/o one! After extended nursing my 2nd son, it started to get regular, but still off a few days here and there. I actually got pregnat with my first w/o having a period for several months.

I also had severe, debilitating leg pain (from a bad disc in my back), that has also gone away.

Nausea was gone in days, totally gone in 2 weeks (most everything was gone in 2 weeks!).

Muscle and joint pain, gone. I get a backache when its time for my period, or when I've done WAY too much in a day , but who doesn't!!

My thought patterns are much better, but still need working on.

Yes, its like a drug to your system. Took a good month before the cravings went away. But, I tell ya, I have the energy for my kids now. AND discovered my son (who was dx'd with Autism about a year ago), has made leaps and bounds on the diet as well.

I do a LOT of baking, and I Make stuff up as I go along. For someone who used to burn water, I'm doing pretty good. It's really not as complicated as you think it will be starting out. It's definitely worth giving it a try to see if you feel better! I make breads, pizza, biscuits, cakes, etc...

And Dairy Queen has a lot of gluten-free ice cream as well . At least they used to... I was gluten-free for awhile 3 years ago, don't think its changed!!

[ktnhsv]

Thank you guys for the encouragement and responses, it helps me greatly to want to give it a try.

I know it's going to be extremely hard for me, so I'm going to have to have a game plan.

Can you tell I'm excited?

[ktnhsv]

Is there a home test I can do? (for celiac?)

I just sent one off for testing for allergies.

My TSH test came back normal , as well as my hormone panel.

Next, I shall do adrenals.

(I should have also said in my first post that I've been tested for all your basics in the last 10 yrs-everything is always normal. The only thing I have never been tested for is adrenals or celiacs.)

[Jean'sBrainonGluten]

It's so hard because I CRAVE wheat, dairy, and sugar. I feel like a drug addict trying to quit.

Is there any way at all to get the specific blood testing for celiac? I ask because I self-diagnosed years ago with an elimination diet and went mostly gluten free but...

it was a real pain for my family, especially my stepmom

I felt self-conscious when eating out and couldn't figure out how to be assertive about things like crouton crumbs left on salad

My family continued to have yummy wheat things and I couldn't handle the sense of deprivation because I also can't eat most gluten free baked goodies

so I bumbled along getting some kind of wheat exposure pretty much weekly and now I have migraines and neuro symptoms and years sort of wasted because I've been so depressed and spacy. Having the test results in black and white really helps in standing up to pressure and temptation, but maybe you're more disciplined than I am. Personally, I'm going to make a printout of my MRI to carry around with me and (hopefully) my lab results.

Also, you might try getting a vitamin D supplement since some of your symptoms could be related to that and vitamin D deprivation is very common and not often checked.

[ravenwoodglass]

Is there a home test I can do? (for celiac?)

I just sent one off for testing for allergies.

My TSH test came back normal , as well as my hormone panel.

Next, I shall do adrenals.

(I should have also said in my first post that I've been tested for all your basics in the last 10 yrs-everything is always normal. The only thing I have never been tested for is adrenals or celiacs.)

You may want to look into Enterolab. They can tell you if you are making antibodies to gluten, soy, eggs, yeast and casien. They also do gene testing.

[ktnhsv]

You may want to look into Enterolab. They can tell you if you are making antibodies to gluten, soy, eggs, yeast and casien. They also do gene testing.

Thank You-I will!

[ktnhsv]

Is there any way at all to get the specific blood testing for celiac? I ask because I self-diagnosed years ago with an elimination diet and went mostly gluten free but...

it was a real pain for my family, especially my stepmom

I felt self-conscious when eating out and couldn't figure out how to be assertive about things like crouton crumbs left on salad

My family continued to have yummy wheat things and I couldn't handle the sense of deprivation because I also can't eat most gluten free baked goodies

so I bumbled along getting some kind of wheat exposure pretty much weekly and now I have migraines and neuro symptoms and years sort of wasted because I've been so depressed and spacy. Having the test results in black and white really helps in standing up to pressure and temptation, but maybe you're more disciplined than I am. Personally, I'm going to make a printout of my MRI to carry around with me and (hopefully) my lab results.

Also, you might try getting a vitamin D supplement since some of your symptoms could be related to that and vitamin D deprivation is very common and not often checked.

There are specific tests , I just have no insurance.

I thought about D deficiency before, but take a multi with 400IU in it. Do people usually take more?